Although systemic sclerosis is thought of as a skin disease, it also affects the joints and other organs, including the lungs. Its prevalence is estimated at three to 24 people per 100,000 globally. Its reported incidence has increased since the 1950s, most likely due to greater physician awareness and better diagnostic tools, scientists say.

Patients tend to die earlier than healthy individuals, with lung problems the main cause of death.

While scientists have done a lot of research to try to determine the cause of systemic sclerosis, few studies have focused on the burden it places on the healthcare system and society. Researchers wondered if a review of published studies would shed light on the subject.

The team found six studies that dealt with the disease’s financial costs and four on its human costs.

The financial studies covered both direct and indirect costs. Direct costs include outpatient care, hospitalizations and medication. Indirect costs include the time that patients lose due to their illness and while seeking health care, and the time their caregivers lose while tending to them.

Researchers said the direct costs of the disease in Europe ranged from €3,544 to €8,452 per patient each year. This equated to $4,179 to $9,967. In Canada the range was 5,038 to 10,673 Canadian dollars, or $3,928 to $8,322. In the United States, the range was $17,365 to $18,396.

The review put total annual costs per patient — the sum of direct and indirect costs — at €11,074 to €22,459 in Europe. This was the equivalent of $13,059 to $26,485. Total costs in Canada were 18,453 Canadian dollars, or $14,388. The figures showed that indirect costs represented the largest portion of total costs, researchers said.

When looking at the human burden of systemic sclerosis, researchers analyzed four studies that used three questionnaires to determine quality of life.

A study based on the EQ-5D health questionnaire showed that systemic sclerosis patients’ scores were lower than those of the general population. Health Assessment Questionnaire and SF-36 scores also showed that patients had a lower quality of life.

The review suggested that not only is patients’ quality of life lower than that of the general population, but also that the disease places a significant economic burden on the healthcare system and society as a whole.

Researchers said better treatments could both improve patient outcomes and ease the financial burden of the disease.

Iqra holds a MSc in Cellular and Molecular Medicine from the University of Ottawa in Ottawa, Canada. She also holds a BSc in Life Sciences from Queen’s University in Kingston, Canada. Currently, she is completing a PhD in Laboratory Medicine and Pathobiology from the University of Toronto in Toronto, Canada. Her research has ranged from across various disease areas including Alzheimer’s disease, myelodysplastic syndrome, bleeding disorders and rare pediatric brain tumors.

Iqra holds a MSc in Cellular and Molecular Medicine from the University of Ottawa in Ottawa, Canada. She also holds a BSc in Life Sciences from Queen’s University in Kingston, Canada. Currently, she is completing a PhD in Laboratory Medicine and Pathobiology from the University of Toronto in Toronto, Canada. Her research has ranged from across various disease areas including Alzheimer’s disease, myelodysplastic syndrome, bleeding disorders and rare pediatric brain tumors.

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One comment

It has totally wrecked my life
I was sporty and sociable
Within a year,l can scarcely function
Eating is a nightmare with no taste or saliva,then gi pain
I am seriously struggling,last year was active and happy
Now seriously dept and scared, there’s terrifying treatment options ,no cure , plus secondary conditions like sjogrens to contend with
I had fantastic quality of life ,now l am constantly scared, cannot do any sport or exercise, eating hurts and does going shopping .I really hate this illness,it is life wrecking .
Friends have deserted in droves
Can’t share anything they do like holidays
Constant pain,face now changing and this is crushing,really demoralising

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